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Nystagmus affects quality of life of children and their parents, confirms new research

A team at the Eye Hospital and School of Ophthalmology and Optometry at Wenzhou Medical University in China have recently published their research on the effects of childhood cataract surgery in young children. The results show that the impact of nystagmus, strabismus and amblyopia, resulting from the cataracts, not from the surgery, have a significant impact on the quality of life of both the child and their parents, when compared to families where the child has full vision. This will come as no surprise to families living with a child who has nystagmus.

The quality of life is affected most for the child because of the impact of these eye conditions on the functional vision, meaning that they are more likely to be limited in the activities they can take part in at school and elsewhere. For parents, the most significant impact on the quality of their life is the constant worry about their child’s eyesight.

It is thought that the best solution would be to bring cataract surgery forward in these children, before the nystagmus, strabismus or amblyopia has time to develop.

Read the full article online here

Sue attends Partially Sighted Society Conference 2018

Last Friday Sue attended the PSS very first Sight Loss conference in Doncaster on behalf of the Nystagmus Network. The day was attended by around 100 people with visual impairment, their family members and friends, carers and health professionals.

It was an opportunity to hear from senior medical and research specialists as well as listen to the personal stories of people living with sight loss.

One speaker, Mr Sid Goel, Consultant Ophthalmic Surgeon, spoke about the advances in cataract surgery, suggesting that cataract removal is always a good idea, even if the patient already has reduced vision due to other causes or conditions.

Sue took the opportunity to ask specifically about patients with nystagmus, a question we often hear from members of our community. Mr Goel was able to provide reassurance that the topical anaesthetics used during the procedure to prevent the sensation of pain also serve to numb the muscles controlling eye movements, which means that the surgery can go ahead without fear of eye movement.

Concerns about surgery and nystagmus are, of course, understandable. We have heard from several people with nystagmus who have had cataracts removed in adulthood, however. They report that their former vision and, in particular, colour perception is restored afterwards to previous levels and they are naturally delighted. Mr Goel would agree. Similarly, babies born with congenital cataracts usually have these removed in early infancy in order that the sight can continue to develop.

Please consult carefully with your surgeon before embarking on any surgery.